External Drain, raising biliruben levels….
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Jen, how is your dad doing these days? Is the drain helping him feel better? It’s pretty amazing how quickly you can get relief when the bile is draining. I hope he’s much more comfortable now, and enjoying his food again.
Tons of good wishes to your whole family,
Kristin
Jennifer….yes, the stent will drain the bile internally. Generally, less output though the external bag indicates that the internal stent is functioning properly. A drop in bilirubin should follow soon. This is what I had been told.
Indeed, it has been a tough week for you and your family. I am looking forward to hearing more good news as the days go on.
Best wishes coming your way,
MarionDad is actually still in the hospital right now – they want to keep him until his bili levels start dropping (it was at just over 230 this morning – seems insanely high to me, but what do I know)! He’s still in a lot of pain, but can get stuff for it when he needs… I know they gave him morphine at some point today, so that should certainly help!
He’ll hopefully be home on the weekend, and I imagine by then his regular pains meds should be able to keep the discomfort he is bound to feel for a while under control. He ate a bit today, and I’m sure as he starts feeling better his appetite will continue to increase…
Thanks for all the comments – it’s been a rough week for us!
Jen
Hi Jennifer,
Glad to hear that your dad is now home after having the procedure and his metal stent inserted. I am sure that he will be looking forward to eating what he wants when he wants!
My dad had the metal stent also and he was in some pain for a few days afterwards. This was controlled with his pain meds when he was in the hospital and when he got home, he was on paracetamol 4 times a day and this seemed to work for him. He took it quite easy when moving around at first then he said he got used to it. Then after a while he didn’t really think about it too much, but was still conscious that it was there and just took it easy and started sleeping on the opposite side of the stent. He used to get the occasion jag of pain as he put it but he also got used to that.
Hopefully over the coming days your dads jaundice will start to wear off and that any itching will also start to go away, and that your dads appetite will also increase!
Your family holiday in 3 weeks time sounds great and I am hoping that your dad will be feeling much better by then and that you can all enjoy this time away together.
Best wishes,
Gavin
Hi,Jennifer,it is quite painful after the procedure and most people need regular analgesia for a couple of weeks.Having said that,it should start to ease after a couple of days.You know its working by the absence of the jaundice,the colour of the urine is sometimes the 1st indicator of that,skin and eyes etc take longer to yellow.Your dad will hopefully recover some apetite soon as the fall in bili levels happens Janet
How long does the pain last for those of you who have had an internal stent put in? He was sure in agony today. I know it’s not a “small” procedure and of course having a metal stent inserted into your body isn’t going to feel great, just wondering when he’ll feel like moving around a bit and eating, etc.
Also – I’m assuming the external drain should really never have much bile in it since he now has a stent? Is it just for the “extra” bile going through his system? Just wondering how all that really works since we haven’t had any experience with it. We’re used to knowing how the drain is working based on the amount of bile, but now I guess it will be based more on blood work and whether he is jaundice or not feeling well then anything else…. I think?
Thanks so much everyone!
I am happy you got it sorted and I hope your dad improves quickly,he should do.Babies are great,I have a newborn nephew so am enjoying babies at the moment Janet
Well, Dad is out and doing okay. He actually got an external drain AND a stent – we have no experience with a stent, so hope that it works for him as well as it has for others!
Kristin – All my well wishes and positive thoughts will be with you on Friday – thank you for all your comments and support the last few days, it’s been a big help for me. I will certainly be thinking of you during your own replacement!
Janet – I actually tend to agree with you – I believe persistance in the key in many instances – complaints included! I think they would have gotten very defensive with us had we attacked them, but luckily it didn’t come to us having to worry about it since he went in today.
Next challenge is to get that bili level WAY down (we imagine it is well over 200 now, but not sure since they haven’t checked in since it was 158 last week). We have our first ever family vacation (parents, myself, my sister and brother) planned to Newfoundland (where Dad was born) in 3 weeks, and sure hope he’s feeling up to it! It will be an amazing and literally a once in a lifetime trip that we are all looking forward to.
Jen
Jen….at last, your Dad is feeling better. I am happy for all involved. Hugs to your little one. She sounds adorable.
Best,
MarionPeople are welcome to disagree but I have been on both sides and have seen how unhelpful it can be to the patient when a “major fuss” is made and how it sometimes backfires.Persistant was my key word,polite but persistant,I think it gets better results Janet
Oh Jennifer,
I also was furious as I read the first post, but am happy to hear that something has now been done. Your story about your daughter also made me smile. Yes, you will probably have your hands full with that one as she gets older!
Wishing for the best for your Dad and my best to you and the rest of your family, too. Let us know when you know more and how Dad is doing. Take care.Darla
I’m SO relieved to hear this. I hope the new drain will work properly, and that your dad will soon be enjoying a good meal and feeling much better.
Please wish me luck with my own drain replacement– I go in this Friday.
Best wishes to your whole family–
Kristin
Finally some good news! Dad went in for the procedure around noon today (it’s now 3:00pm here). I haven’t heard how it went, but I’m sure I will soon. I sure hope all went well and this helps him feel better. I’m thrilled that he’ll be allowed to eat what he wants when he wants now…. hopefully he can gain a few of the lost pounds back. I’m a bit nervous that we’ll get bad news about the cause of all these problems, but trying my best to remain positive!
Cute happy story for you all though – I have an 8 month old daughter (also Mom and Dad’s first grandchild, but soon to not be the only one as my sister is expecting)!! Anyway, yesterday she was getting into stuff so I sat next to her to tell her no and put it back. She furrowed her brow at me like she was annoyed, took the soother out of her mouth and shoved it directly and perfectly into mine in the middle of me telling her no…. my baby told me to shut up with her soother!! I haven’t laughed like that in ages. She’s so bold… I am in serious trouble when she’s able to use her words and not just her soother
She has helped us all smile in the face of such adversity over the last few months… babies are such a blessing!!I will let you all know how Dad is doing once I get news. Thank you all for the support – not sure what I would do without this site!
Jen
Jennifer, I have to disagree (very respectfully) with Janet/Magic. You need to go in there today and make a MAJOR fuss– you, your mother, and any other family members. This lack of care is endangering your dad’s life and the lack of food and water is weakening his body when he needs all his resources to deal with the cancer.
Do you know have any friends who are nurses, doctors, or other medical people, even in a completely different field? They may be able to give you ideas about how to get some action on your father’s case. Any chance of getting your dad moved to a different floor?
I’ll be thinking of all of you today. Please let us know now it goes. Once your dad gets the corrrect drain, he will get SUCH relief– for me it was just astonishing.
Kristin
Jennifer,what a nightmare for you.Is the problem coming through the emergency system?I am in another health system again!!but sometimes it is quicker to access tests and procedures if you are an inpatient,in your dads case it has backfired.Who knows what else is going on in there.Good luck in getting il properly sorted out. Janet
addit…by the way dont make a major fuss,just a subtle persistant one
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